Tag: Hope

First of all, please excuse my absence on the blogosphere recently. I have been writing and writing and writing, but I can’t put anything I’ve been working on here because I have submitted it all to various journals and newspapers to try to get it published!!! As a result, much of my allotted writing time has been dedicated to that pursuit. Happily, I just received word this week that a creative nonfiction essay I wrote will be published June 15 in Sky Island Journal! Woohoo!

And, with that, let me write about some of the highlights of what has been in my mind – setting goals, and also failure, rejection, making mistakes, and trying anyway.

For some reason, I have a terrible time setting goals. I know the SMART goal recommendations – Specific, Measurable, Achievable, Relevant, and Time-sensitive. I love the list, but I still can’t come up with a goal.

I took a little online blog branding course several months ago after I started this blog. I was trying to figure out if there was some sort of methodology I should be following so you, dear readers, don’t wonder where on earth my head is every single time you read one of my blog posts. In other words, is there some sort of path or a strategy to building a blog that I have as yet not followed? (Answer: yes; but, see, it requires setting goals and focusing…so please proceed to the next paragraph…).

One of the first exercises was to come up with 3 goals. Oh cripe. My crossfit coach is always encouraging us to come up with goals, too. I have dodged that bullet for two straight years now. Both cases have got me thinking about how really and truly awful I am at setting goals and why that might be. I am 100% not awful at all at achieving things, I am just terrible at setting goals and answering questions like “what would success look like?” I don’t like to be hemmed in. In fact, probably if I set some goals I’d achieve them before I even wrote them down. Start a blog. See? That could have been a goal. But I did it already. Figure out how to pitch for publication. Done. I am a do-er. But I am also a planner, so I am slightly mystified about why this task both eludes me and causes me so much agita.

In the end, I’ve decided that my problem isn’t so much the task itself as the destination. I understand full well that if I knew where I was going and took actual concrete steps (i.e.: goals) to get there I might actually get there (or get there faster). I do get places, it just tends to be a more circuitous, scenic route. I’ll be the first to say that there’s a lot to be learned by not going from point A to point B. But if I am being completely honest, there’s also the reality (which I know is real thanks to decades of journaling because I would never remember this) that I re-learn truths I discovered already over and over again. My cousin wrote this great book called Things I Want to Remember Not to Forget (by Chris Waddell). I so thoroughly relate to that title. Is this life (asking for a friend)?

Anyhoo…I suspect my brain block about goals has at least a little to do with the unpleasantness of failure and rejection. If I set a goal and don’t achieve it, well that’s no good. Who wants that? If I set a goal and fixate on achieving it, that wouldn’t be great either, to be fair. Pitching to journals, even blogging, sets me up to be rejected and to push that old fear-mongering anxiety button that says I am not enough – not good enough, not smart enough, not worthy enough, a failure. Jeez. Tough crowd. But here’s the beauty of getting older – I get now that I am the one telling myself all these horrible untruths. Sure, I was helped along with material by the horror of being a rule-following, nerdy kid in middle school (fact: kids at that age are mean). But, ultimately, it’s down to me to face those negative storylines, check the narrative (“the feelings are real, but is the story they are telling true?”), and strive to make great mistakes. Then try again. This is what my husband and I teach our children. My goal is to be a good example. And, FINE, @crossfitlaunchpad, I’ll get my first strict pull-up, too.

Please go ahead and share the good word!

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Life is such a committed and earnest teacher. Everyone has their stuff. And life dutifully provides opportunities, over and over again, to practice navigating whatever yours might be.

I like to fix things. Not like broken machines, but like broken people or uncomfortable situations or disorder. In fact, now that I think about it, I don’t like the feeling of anything that I feel responsible for being out of place. And I feel responsible for a whole bunch of stuff. That goes for people as well as a leaky faucet. I. Just. Can’t. Ignore. It.

I am experienced enough now (read: old) that I can see it happening, and I actually recognize it for what it is. I discover a “problem,” a switch flips in my mind, adrenaline floods in, and I hone in with laser focus on “solving the situation.” Everything else going on around me becomes annoying distraction. It’s really primitive. And if it weren’t so uncomfortable and I weren’t so focused on whatever the perceived threat might be, it’s also quite fascinating. I know what I am supposed to do here – lots of deep breaths and comforting reassurance to my anxious parts. But my brain keeps tacking back to the VERY BIG PROBLEM THAT NEEDS TO BE FIXED. In those moments, all I really, really want is to fix it so I can put this horrible feeling away and chillax.

The way this manifests when it comes to people who need help is much less obvious than when something breaks in my house. When I say “need help,” I don’t mean like they are hurt or that their house is on fire. Surely I’d go into adrenaline-driven fixer mode in those cases. No, in this case, I mean they need help with something emotional. There isn’t the flood of adrenaline or the laser-like focus, but it’s still a problem to be solved. Internally, it feels like some sort of calling, that it’s my job to fix the bad feelings, or at least temporarily to take away the pain. That’s a lot of pressure and, rationally speaking, it’s totally unrealistic. But who ever said this behavior was rational?

I noticed long ago that very often one’s best attribute or character trait doubles as one’s worst. For me, this is where being reliable and dependable kind of backfires. I am dependable and reliable so people find any number of ways to depend and rely on me. And, of course, then I feel the need to continue to prove my dependability and reliability and to not let anyone down. And it goes on like this in a sort of self-fulfilling cycle for ever and ever…until I crash and burn because I have lent out so much of myself to so many people that I have completely hollowed out my own core. Emotional problems tend to have a longer-running course than physical, house-on-fire problems. They require the pacing of a marathon versus a sprint. But when it comes to fixing things, I have the mindset of a sprinter and, inevitably, I hit a wall and start to get awfully tired…

I think a lot of moms suffer from the feeling of having only so much to give, being needed by many, torn in too many directions, and wanting to fix things that are out of their control. That’s certainly the case for me, and I fully support little getaways here and there to revive oneself and actually be able to think and breathe and just be.

But, for me, this internal fixer is a lifelong pattern. Only after I completely lost myself with the responsibilities of parenting (I don’t even need to explain that kids have needs), childing (also known as: being a reliable and dependable daughter), working (see also: proving I am a productive citizen and “pulling my weight” because, obviously, only a paycheck tells you that), being a good friend (“you can count on me!”), did it become clear to me that the two most-used phrases in my vocabulary are “I’m sorry” and “I should.” I’m either a disappointment/failure/inadequate (“I’m sorry”) and/or I’m driven to prove my worth/worthiness/value (“I should”). Nowhere in there am I thinking, “gosh, I’d love to do that.” It got to the point where I would ask myself, “What stirs your soul?” and I had literally no idea how to answer. Because, I’m sorry, I am so selfish, I should not be thinking about myself when so many people need me.

It turns out that it just isn’t possible to save everyone without totally tanking yourself. Another disappointing life lesson, but a true one. That’s the whole reason my blog has the title it does – it’s a reminder that you can’t run around putting everyone else’s oxygen masks on while simultaneously allowing yourself to be asphyxiated. It won’t end well.

None of this is to say be selfish. Not at all. I certainly struggle with that notion, because that’s how it feels: I am letting people down. I am selfish. I should just try harder. And, of course, there are plenty of things that just need to be done, whether they fill your cup or not. That’s life, and I spend the majority of my day doing just that. Most days, I do much of my to-do list, in all its mundane glory, joyfully. And I admittedly love knowing that people can count on me, and that they know that I am loyal and reliable no matter the circumstances. The trouble strikes when I need a break and don’t know how to say no. It would seem to be such a simple word. Two letters, and virtually the same spelling and pronunciation in multiple languages. And, yet, I am much more apt to say “maybe,” which really isn’t super helpful to anyone involved because it leaves the door open to a road I already know I don’t want to go down. SO, take it from me – when your plate is full and your cup is spilling over with responsibility to and for others, make sure there is a little time carved out in there for you. And if there’s a “no” screaming in your head, say it. It’s not indulgence, it’s self-preservation.

You can be more effective, not to mention more fulfilled, if you actually replenish yourself along the way. Find your inner compass, actually listen to it, and let it guide you. Prioritize. Be in charge of your to-do list, not subjugated by it. Evaluate the opportunity cost of the choices you make – what do you sacrifice by committing to x, y, z? Be intentional with how you spend your time. Think “if I say yes to ‘x’, what will I have to say ‘no’ to?” Say no sometimes. Be true to you. Make sure you are filling your cup. I can assure you, life will provide ample opportunity to practice.

Like this:

Rural communities are suffering. Highways bypass historic downtowns, big box stores cannibalize revenues from local retailers, and there are limited employment options, forcing young people to leave in search of opportunity. These issues are not unique to rural areas, but are exacerbated there by the lack of a critical population mass, and more piecemeal and sporadic services and resources. In some places, “homecomers” have led the way back to the rural communities where they were raised. Many communities are expanding high speed broadband and e-connectivity resources to improve education, health care, and business opportunities. And some communities band together to painstakingly plan for renewal by focusing on the vital role of their most historic structures in anchoring their past while launching a new future.

The Industrial Revolution spurred the creation out of farmland or forest of many of our nation’s cities and towns. Factories sprung up along the shores of powerful rivers to capitalize on the harnessed hydropower. Immigrants in search of work flocked to what, at the time, were outposts of civilization, eventually building homes and a community around their livelihoods. Homes, churches, performance halls, and other civic institutions emerged from the wildlands.

For a time, the paper industry of Millinocket, ME; the appliance and railroad industries of Fort Wayne, IN; the textiles of Lawrence, MA; the shoes of North Brookfield, MA; and the steel, textile, and tanneries of North Philadelphia, PA, to name just a few, thrived. But then manufacturing practices became more mechanized. Companies found cheaper labor in the southern U.S. or abroad. Demand for paper declined. More modern manufacturing facilities evolved and the original production methods and buildings became obsolete.

Slowly, insidiously, the industries that had built these cities, towns, and neighborhoods shuttered their doors, moving elsewhere or closing entirely. What remains are vacant mill buildings, deteriorating opera houses, empty storefronts – the dilapidated, decaying nucleus of the country’s manufacturing communities. What happens when the primary source of employment evaporates but a community has set down roots and traditions; has built ornate civic structures, but doesn’t have the resources to maintain them? When the city or town itself loses its spark and stagnates? And when it barely recovers from the last recession before the next one begins?

A new future requires some sort of catalyst to forge forward out of stagnation. What is it that finally ignites revitalization in some communities, while others continue to languish? I have a few theories after two decades working in real estate analysis and community development. One is an engaged and competent local government. Another is a devoted group of local citizens with a strong leader. A cohesive vision and implementable plan, both with short- and long-term goals, is critical. Usually success takes years of coordinated effort between local and state government and committed volunteers. Surely sprinkled in there is a bit of luck and good timing.

In North Brookfield, MA, a rural community of 4,800 people about 25 minutes from Worcester and 60 miles west of Boston, residents and town leaders have rallied around the historic Townhouse as the focal point for their community’s redevelopment efforts. Designed by Eldridge Boyden, a locally accomplished architect, the Townhouse was one of the first public spaces in this country built in the French Second Empire and Italianate styles. The building was constructed in 1864, and served as a hub of political, cultural, and community activity for the broader region.

Then times changed. The Batcheller Shoe Company closed in the early 1900s, and with that and the evolution of retail towards big box stores and online shopping most of the family-owned businesses in downtown North Brookfield also eventually closed. Currently, the almost 14,500 square foot Townhouse is vacant, and the main street is quiet. The Bell Tower was damaged in Tropical Storm Irene in 2011 and determined to be structurally unsound.

Before

Before

Townhouse Without Bell Tower

But North Brookfield is a small, tight-knit community with a ton of heart. Manufacturing continues on a smaller scale, with Vibram, the Italian shoe sole company, operating the former Quabog Corporation rubber manufacturing plant across the street from the Townhouse. The Friends of the North Brookfield Townhouse, a non-profit group brimming with volunteers, ideas, and passion, was organized over a decade ago with the mission of preserving and renovating the Townhouse to re-establish it as the center of civic, political, social, and cultural activities. The Friends and the town have worked arduously to preserve the building, hiring a local craftsman to replace the Bell Tower in 2014 and, in 2015, thanks to state funding, securing the building from water infiltration by replacing the roof, windows, dormers and gutters.

Rebuilding the Bell Tower

New Bell Tower

Among many other initiatives, including applying for and being awarded an allocation of historic tax credits to help finance a renovation, in the fall of 2018 the Friends facilitated the painting of the building’s exterior. They collected donations for all of the supplies, and brought in lunch daily for the workers, a number of whom were prisoners from the Worcester County Sheriff’s office work release program. Townspeople passing by would see what was happening and stop to ask how they could help. Some literally picked up a paintbrush and worked for a couple of days, some gave money for supplies, while others brought chocolate chip cookies, brownies or homemade pumpkin bread to share. There was no cost to the town. The results speak for themselves.

Before

After

Before

After

The Townhouse is a building with high emotional content. It has the capacity to stir one’s soul. In the traditional metrics of market conditions, it’s a challenge and the Friends will need financial support from grants to private donations to pull it off. But not everything that is worthwhile in life is quantifiable. In fact, I would argue, that the things that matter most have no intrinsic monetary value – like community, integrity, hard work, passion, and hope. The town of North Brookfield has these in spades. The Townhouse is a center piece of the town architecturally and a vital link between its past and its future. That future is being constructed with vision and dedication, strong leadership, and a plan based in solid fundamentals that will capture the imagination of the town and the region. Maybe sprinkled with a bit of luck for good measure.

Welcome to North Brookfield – the heart and sole of Massachusetts!

“Though nothing can bring back the hourOf splendor in the grass, of glory in the flower;We will grieve not, rather findStrength in what remains behind;In the primal sympathyWhich having been must ever be…” ― from William Wordsworth’s Ode: Intimations of Immortality

“Let me tell you the secret that has led to my goal. My strength lies solely in my tenacity.” – Louis Pasteur

Like this:

“Our teachers weren’t kidding when they said we’d take lots of walks and that people in the villages are very content to do nothing. No plans, nothing. I thought I’d handle that well because I, too, like to do nothing. But I only really do nothing for brief interludes during the day, in between finding something else to do. When I sit and knit, read, write letters, make necklaces, etc., I consider that pretty much doing nothing. Here they just sit. It’s not an easy lifestyle to adjust to.” – me, March 2, 1996

I had to laugh when I read this journal entry from my village homestay in Madagascar. In the U.S. we live in a culture that is so go-go-go that I didn’t even recognize that my doing nothing was still doing something. That was true 20 years ago, and it remains true today. I just happen to be more aware of it now. Doing nothing and remembering to breathe are literally things I need to practice. Five minutes sitting still without my mind wandering to a hundred different items on my to-do list is impossible. Truly. Try it and you’ll see it’s not just me! “Monkey mind” is the Buddhist term for the incessant chatter and sense of unsettledness in one’s mind. It looks like this:

This is what a monkey mind looks like; illustration by Lilian Leahy

That phrase evokes images that just crack me up, quite like this Lilian Leahy illustration. The ring-tailed lemurs shown in the following photos that I took in Madagascar also crack me up. They are very Zen. This is NOT what having a “monkey mind” looks like.

Ring-tailed lemur posing

Ring-tailed lemur relaxing in the sun

Ring tailed lemur as opportunist – that banana was not for him

When I was diagnosed with Rheumatoid Arthritis, and finally accepted it (that’s another story altogether), I considered all options for how to live my healthiest life given the cards I had been dealt. Besides doing all the regular stuff my doctor asks – take all the prescribed medications, see her every three months, have bloodwork done at the lab regularly, get exercise – I wondered if there was anything else that would help. I had two very little kids when I was diagnosed. And I love leading a busy and active life. I want to be as healthy as possible and have left no stone unturned in my quest.

Having RA has taught me many, many philosophical but also practical things about life. My diagnosis and subsequent eventual acceptance was like a massive 2×4 smacked across the head saying, “ummm, hellooooo, for real, you need to pay attention.” It has taught me about cherishing the little things in life, and not taking any day or any thing for granted. It’s like a constant anatomy lesson – yes! that pain I was wishing could be solved by a root canal is in fact a jaw joint (too bad for me). It has taught me about control, and that it turns out I am not in it. And, it has taught me about how stress and my monkey mind can be implicated in RA flares and general feelings of being overwhelmed.

After a bit of research and a lot of finagling of schedules, five years ago I enrolled in an 8-week course at the Benson Henry Institute for Mind Body Medicine (BHI) at Massachusetts General Hospital. This course introduced me to the term “monkey mind,” not to mention to the fact that I have an extremely active monkey. You may have already figured that out from the sheer breadth of subjects I write about. I am not exactly focused on one thing, rarely one thing at a time, and I am passionate about many!

For the record, I am not one to buy into the concepts of meditation and relaxation easily. The term self-care makes me cringe, as do the words snuggle and cuddle (but that’s an aside). Bluck. All that touchy-feely stuff gives me the shivers. So you could say that I entered BHI skeptical at best. But I figured since I had devoted my time to this, I might as well go all in and have an open mind (pun intended).

Did my life change overnight and was my RA banished for good? No. It takes a long time to learn new habits, and the brain tends to tack back to its well-trod neural pathways. It takes effort and practice to become aware of the mind’s motivation. For me, sitting still and doing nothing were bad words. My inclination is still more towards whirling dervish than calm Buddha.

But I learned an incredible amount about how important the act of doing nothing and sitting still is for the brain. It’s a biological reality that is now backed up with MRI studies and scientific data. The scientifically validated benefits of mindfulness include: decreased stress; reduced symptoms associated with depression, anxiety disorders, pain and insomnia; an enhanced ability to pay attention; and a higher quality of life. Don’t believe me? Check out Harvard researcher Sara Lazar’s TEDx talk on the effect of meditation on the brain.

Or Dan Harris, the ABC anchor who had a panic attack on live television that led him to meditation and eventually to writing the book 10% Happier.

Personally, my most notable takeaway from the course happened on the first night. The instructor flashed a powerpoint slide that read, “If you can’t make room for exercise now, you’ll have to make room for illness later.”

I was already making room, lots of room, for illness. But I wasn’t prioritizing myself. AT ALL. This one quote completely changed the way I viewed my calendar and what was and was not negotiable on it. I began swimming and made it a permanent item on my calendar. I trained myself to take a deep breath every time I come to a stop sign or stoplight. I downloaded a million mindfulness apps (still working on pausing long enough to actually use them).

My message to you is this – skin creams may help with wrinkles and dry skin, but meditation enhances a wrinkled mind.

Breathe. Deeply. And often. It helps.

Serenity Prayer

Grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference.

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The holiday season is manic. I’ll just start there. It starts around Halloween and sails right through Thanksgiving into Hanukkah and Christmas and then New Year’s. Since Halloween starts in early October now, with ghosting and decorating and thinking about costumes all part of the lead up to the big night, basically the whole fall, from back-to-school right through New Year’s is rich with the bustle of life and activity and, frankly, the pace is completely unhinged and frenetic and exhausting. Part of me loves it, and a big part of me wants to make it stop!

So, here’s the thing I’ve started to notice as life goes on and I get older, for certain, and hopefully wiser. You have to celebrate the little things in life every day. You have to take a step back and take that deep breath and find joy even when the rest of the day is utterly forgettable. Even when the day includes yet another trip to Party City and all you can think is “I just can’t.” Even when the day is spent stacked with activities and chauffeuring your offspring hither and yon. There is so much to be worn down by, so much negativity, so much TO DO, that you run the risk of missing it all, the proverbial not seeing the forest for the trees.

The stuff that we remember in life, the stuff that matters and that you’ll be thinking about when your time on this Earth is winding down, isn’t the holiday shopping (unless there’s some epic mishap that results in a good story to tell) or what you got or how much you got done, like there’s some holy checklist and the more you check off the better you are or your afterlife will be. No. The manic pursuit of a bucket list, or any list, how many places you’ve been, how much money you’ve made…these are empty and fruitless quests if the goal is happiness or contentment.

The stuff that really fills and sustains the soul, is found in the gathering of friends and family, of multiple generations, to enjoy a cup of coffee and some holiday treats on Christmas morning. The sustenance comes from the sharing of stories and experiences, from toasting our brimming coffee cups that will help us survive the day after a reveille that was a little on the early side. It’s in the sheer delight and simplicity of seeing my mom, who truly is only capable of living in the present anymore, marvel at the Christmas trees and lights and enthusiastically sing out Christmas songs. It’s a warm and gentle sea breeze; it’s the magic of dolphins playfully diving in and out of the waves; it’s a full moon hanging heavily in the evening sky – and still there in the blue of the next morning (a moonset sunrise); it’s a snow day when you just drop everything and play that board game with your kids and bake comfort foods and ignore the “to do” list; it’s a friend who leaves you tea and biscuits at your door when you are down and feeling broken.

There is magic and inspiration in the big things – a marathon or a trip abroad or a new experience. But it’s how you weave the experiences together, it’s what you live with every day, what sustains you when life isn’t particularly glamorous or grand, that matters most. It’s the daily appreciation of the little things: like an umbrella when it’s raining; a baby’s laugh that rings out like a balm for the soul; a solitary chocolate chip; a warm beverage; a hug from a friend.

Remember to be grateful and to cherish all of life’s little moments, even the messy ones. Because life is really the sum of its parts, and the little moments are what matter most.

As I sit here trying desperately to write for five minutes without being interrupted by one of my children, surrounded by the detritus of Christmas, I guess I should try to take this to heart. This is it. This is the good stuff.

So I’ll close with a memory and a song from several years ago. The setting is the East Sangerville Grange in Sangerville, Maine. It was February, it was freezing, the snow was piled high, and a blizzard was on the way. In this simple, modest, one-room grange hall in the central Maine highlands on this cold and snowy night many from the community gathered to listen to Bill Staines sing and play acoustic guitar. And I was introduced to one of the most beautiful and moving songs I have ever heard. It’s called Child of Mine. Click here to hear it live.

The full lyrics are displayed below. And they apply to everyone – adult, child, have children, or don’t – everywhere.

Face, don’t fear, the unknown.

Find joy in each day.

Love sees us through.

Connect with people and our common humanity.

And you will be buoyed by hope. And maybe survive the holiday season just a little more happily.

Child of Mine

Child of mine, you are the wildest wind
And the dearest dream I will ever know
Love’s lasting light shines out from deep within
This father’s heart as I watch you grow

Child of mine, you are the break of dawn
And the brightest star I will ever know
Love’s lasting light comes shining on and on
From this mother’s heart as I watch you grow

There is a road and that road is all your own
But we are here, you need not walk alone
To face, not fear each coming new unknown
Is the way to lift your wings
Child of mine, you are the sweetest song
And the greatest gift I will ever know

Child of mine, where spirits fly above
There is but one that belongs to you
So let it grow and it will thrive on love
For it is love that sees us through

You have the hands that will open up the doors
You have the hopes this world is waiting for
You are my own but you are so much more
You are tomorrow on the wing, child of mine

Like this:

Any woman who has had a baby knows about breathing through pain. And I am here to say that I am absolutely as imperfect as they come when it comes to breathing through anything. I get so angry and frustrated and want to just wallow in my misery sometimes. Very graceful. Very zen. I am more of a just-give-me-a-to-do-list-and-I’ll-do-it kind of person.

As with most new parents, we didn’t sleep much those first few months. Our baby was fussy and needed to be held all the time and, being the worried new mom that I was, I spent what little “free time” I had researching what I was doing wrong and the many ways I may never sleep again.

I am from a family that says things like, “I am not sick, I just don’t feel well”. We push through and don’t complain. So when my hands started to hurt about six weeks postpartum I chalked it up to constantly holding a heavy baby and exhaustion. The pain would come and go, and time was a very slippery and elusive concept in those days, so carpal tunnel syndrome seemed like a legitimate possibility. Sure some days my legs kind of ached, too, but that’s what atrophy feels like, isn’t it? I distinctly remember hobbling down the stairs to the backyard saying to my mom, “I feel like I am getting worse and not better. Is this normal?”. Then one day my knee visibly swelled up. Having barely left the house in months, let alone done anything active enough to cause an injury, I finally couldn’t find an answer for that one.

I was diagnosed with Rheumatoid Arthritis (RA) two weeks later. Cue record scratch. Arthritis is for old people, isn’t it?

I’d love to say that I went home from the doctor with my chin held high and soldiered on with zero self-pity. Ha! No, no, no. There were some serious bellyaching moments and I definitely asked “why me” more than once. I was shocked, almost offended, that this could happen to me. What the heck did I do to deserve this? Very zen, like I said. For me, RA meant one big old Rude Awakening.

Pro tip – don’t google your newly diagnosed disease when you get home from the doctor. It doesn’t end well. Ignorance truly is bliss.

With the words “severe prognosis” ringing in my ears, I was sent home to begin to ween my baby off breastmilk so I could start on some pretty powerful medications to try to change the course of the disease. I remember calling my OB and asking for advice on how to ween a baby, explaining what had happened and why in this age of “breastmilk is best” pressure I was stopping. The nurse I spoke with, thank goodness, was so compassionate. I will never forget her kindness and her words, “You did such a good job”. I needed to hear that. It’s very lonely to be sick, have a brand new baby with all the societal judgment that comes with parenting, and your choices aren’t yours anymore.

That was part of the emotional pain of RA for me. The diagnosis, whether you have a little baby or not, brings a flood of fears and unknowns. Google told me that 1/3 of people with RA are so disabled after five years that they can no longer work; I was denied short-term disability; the medication side effects and disclaimers were terrifying to read. The disease itself is an unpredictable roller coaster ride. Some days are better than others, some medications work well, others make you nauseous. It’s all trial and error. No lists.

And the physical pain? Well, it’s like nothing else, quite. A broken arm? Maybe. Childbirth? I guess so. It’s intense and deep and unrelenting. 40mg of prednisone and 800mg of ibuprofen wouldn’t even touch it some days. I couldn’t lift my baby out of the crib because I was cradling my arm so gingerly. Some days I couldn’t walk. I never knew where the pain would go next, which joint would be affected. Hips, shoulders, jaw – those are the worst. You can work around a hand or a finger, but it’s impossible to eat or even smile when your jaw joint is inflamed. I begged my dentist to tell me it wasn’t RA and I just needed a root canal. Anything, like I said, for someone to just fix it.

I have tried to figure out what triggers my flare ups. I cut out sugar and caffeine and alcohol and gluten – pretty much all joy – and it made no discernable difference except that I was more miserable and now high maintenance as well. I have submitted myself to science and participated in pain studies. Mostly I learned that I have a high tolerance for pain and that ice is my friend. I have no idea why some days are better than others. Remember how I said that I like order and a nice to do list? Yeah, RA doesn’t work like that.

It turns out that that kind of checklist mentality, where if you just check the right boxes you are in control, is a false premise. That remains a disappointing life lesson for me. But I am working on it.

Long, long story short, eventually the meds did their thing and my RA went into remission. For the time being, I don’t have any pain and haven’t had any permanent damage to my bones or joints. That in and of itself is a miracle. Truly. I’ll write a whole post on how different the outlook is for RA patients who were diagnosed after methotrexate started to be used to treat RA as compared to previously when all that could be done was attempt to manage the pain.

It took a lot of time, a lot of deep breathing, thousands of laps in the pool, sometimes screaming underwater, sometimes also crying into my goggles, for all the emotional toxicity to work its way through my system. But eventually, that piece settled, too.

Now I swim in a masters swim program. I participated in a triathlon a year ago, something that was absolutely unimaginable only a year prior. I go to crossfit. I traveled to Guatemala! Hope abounds.

I am tempted to say that I conquered RA, that I win. But that would mean that I haven’t learned anything from all of this. I have been around the block enough times now to know that my RA and I are just in a temporary place of peace, and that it will inevitably come back. And when it does, honestly, it will be really hard for me. I don’t expect that my despair will be as deep, but I’ll surely still long for that elusive checklist and the return to normalcy. Now I know, though, that I CAN come back, that RA is just one part of my story, and that I am not less than because of this. As Dory says in Finding Nemo, “Just keep swimming, just keep swimming”. Seems like some pretty darn good life advice. One day at a time. One breath at a time. One lap at a time. One foot in front of the other.

Post Triathlon with my “I have RA AND I am an athlete” shirt on

Please go ahead and share the good word!

Like this:

It would be disingenuous of me not to share how HARD it was for me to go to Guatemala. That may have been clear from my earlier post that mentions the soul-searching I went through to decide to go in the first place. I am nothing if not risk averse. Or from the tears I cried when it was actually time to go to the airport. It was really HARD to leave – there were so many unknowns and my old friend self-doubt had a lot to say about my decision.

Sure, I’ve been brave before – ostensibly. I’ve traveled all over the world, I’ve taken jobs in states and countries I had previously never even been to before arriving for work. But so much of that bravery was born of desperation or an “it can’t be worse than this” attitude, not actual courage. And so much of it was before having children. Going to Guatemala, on the other hand, was a choice to do something different when things were going perfectly fine. And that kind of rocked me.

One of my favorite all time quotes is: “I went to the woods because I wished to live deliberately, to front only the essential facts of life, and see if I could not learn what it had to teach, and not, when I came to die, discover that I had not lived”. That’s from Henry David Thoreau’s Walden. It’s a message I picked up decades ago, and it’s one I’ve carried with me since.

In my twenties, I would literally go to the woods, especially my sanctuary around Katahdin in Maine, where I found my people, my place, my footing in this world when I needed it most. I find life there to be a little less noisy, a little more simple, and the scenery so beautiful that it soothes my busy brain.

As I’ve gotten older and my responsibilities to and for others have expanded, I try to find ways to simplify my life, to front only the essential things, to bring the peace that I find when I am in the woods home with me. Despite all my family responsibilities, my anxiety, my self-doubt, I don’t want to forget to live. I want to live authentically and bravely and not, like Thoreau says, from the vantage point of looking back at the end of my days, discover that I had not lived.

And so I choose, daily, to face into the fear. I get on the plane (heck, I buy the plane tickets!) to Guatemala; I push the publish button on this blog while cowering behind the screen awash in vulnerability; I belay at the rock gym even though, fully trained to belay, my mind still tells me it’s awfully risky; I participate in a triathlon for the first time ever when my Rheumatoid Arthritis is finally in remission and I think “maybe I can still do something like this after all”; I drive my beautiful, vivacious, young and also scared mom to the doctor and hear the Alzheimer’s diagnosis we have suspected but been dreading; I go to the woods with my kids and share with them the joy I’ve found there, though it’s not nearly as simple or quiet with them in tow! I stretch the boundaries of my comfort zone. I breath through the self-doubt and the fear and I LIVE.

My life has been the very definition of bittersweet these last several years. And I am so incredibly grateful for all of it. Without the fear, how would I find my courage? Without the bitter, how would I taste the sweet?